PMID: 8950670Nov 1, 1996Paper

Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents

Journal of Medical Genetics
J BinedellP S Harper

Abstract

Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.

References

Jan 1, 1979·American Journal of Medical Genetics·A Lippman-Hand, F C Fraser
Jul 1, 1992·FASEB Journal : Official Publication of the Federation of American Societies for Experimental Biology·D M Ball, P S Harper
Sep 1, 1992·Journal of Medical Ethics·P Alderson
Jun 1, 1991·American Journal of Medical Genetics·M Z Pelias
May 19, 1990·Lancet·P S Harper, A Clarke
Feb 1, 1989·American Journal of Medical Genetics·S FoxM R Hayden
Sep 1, 1989·Journal of Adolescence·L MannC Power
Mar 1, 1987·Journal of Medical Ethics·J Green, A Stewart
Nov 17, 1983·Nature·J F GusellaA Y Sakaguchi
Sep 15, 1994·American Journal of Medical Genetics·S Kessler
Sep 15, 1994·American Journal of Medical Genetics·A M CodoriJ Brandt
Oct 1, 1994·Journal of Medical Genetics·T M Marteau
Apr 15, 1994·American Journal of Medical Genetics·N F Sharpe
Sep 21, 1994·JAMA : the Journal of the American Medical Association·D C WertzP R Reilly

❮ Previous
Next ❯

Citations

Mar 19, 2008·Journal of Genetic Counseling·Kathleen J H SparbelJane S Paulsen
Jan 1, 2003·Brain Research Bulletin·Nellie Georgiou-KaristianisEdmond Chiu
Dec 2, 1998·Patient Education and Counseling·G Evers-Kiebooms, M Decruyenaere
Sep 22, 2000·Archives of Disease in Childhood·A Fryer
Aug 27, 1999·BMJ : British Medical Journal·P S HarperR Harper
Nov 3, 2017·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Oliver W QuarrellEmilia K Bijlsma
Jul 13, 2002·American Journal of Medical Genetics·Allyn McConkie-RosellAve M Lachiewicz
Jan 18, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Pascal BorryKris Dierickx
Jan 18, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Angela R BradburyChristopher K Daugherty
Jan 30, 2020·Journal of Molecular Neuroscience : MN·Lidia V GabisAnnick Raas-Rothschild
Jun 28, 2018·Journal of Community Genetics·Angus J Clarke, Carina Wallgren-Pettersson
Nov 16, 2018·Journal of Community Genetics·Danielle S DondanvilleJoanna H Fanos
Aug 1, 1997·Journal of the Royal Society of Medicine·A Fryer
Feb 1, 2004·Journal of Genetic Counseling·Allyn McConkie-Rosell, Gail A Spiridigliozzi

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.